Things are not peachy keen in Katie land. I have been loath to post here because I don’t want to be the harbinger of pain and sadness. It’s interesting; I don’t mind writing my essays all gloom and doom and then filing them away, but putting things ‘out here’ in the public forum, seems different. Maybe that is a clue why I have yet to send any essays out to publishers. Hmmmmm.
So, it looks like my ERCP surgery with a cut to the Sphincter of Oddi, was a step in the right direction. I got relief from it. However, when the stent was removed, the pain started coming back. According to the doctor, this really shouldn’t be happening.
Yeah, well, according to doctors, I really shouldn’t be happening. I am a zebra and I have a set of stripes no one has ever seen before. So, what next?
My gastro dr. is really quite good. I really appreciate him. He gets the Zebra thing. He is really frustrated for me that the pain is back. But, he says at least that gives us an idea about what is going on. So far, no tests have come back with a single hint of how to proceed.
He told me there is another, more drastic and dangerous procedure that could possibly help. In that procedure, a cut is made in the pancreas itself and a stent is put in the pancreatic duct. Often, this is a permanent stent. For some reason, this is a two part surgery.
When we spoke in his office on Tuesday, he told me he would make an appointment for me in Houston with Dr. Eichmann, who is a renowned specialist in this procedure. He did point out that he does the procedure as well but wanted another opinion.
On Wednesday he called me and told me he had spoken extensively with Dr. Eichmann and his staff and they recommended he do the first part of the surgery here and then send me for the actual stenting to Houston.
It all sounds pretty overwhelming.
The risk of runaway, horrid pancreatitis, is very, very high.
I feel flat. I don’t know what to do anymore. I just want to ignore it. If I don’t eat much, and I only eat bland food, it isn’t too bad.
Maybe I can hold off for a bit.
I am really, really depressed by all of this. It is taking a huge toll on my family and my marriage. I feel like saying, “fuck this… I surrender… kill me now.”
I know I should be grateful. After all, it isn’t cancer, right? I don’t know. All I know is that the little bastards with their little bastard knives are back in my right side and they are sharpening the knives and trying to cut holes in me. Bastards. Go away.
I understand that you feel flat and you feel like giving up. Maybe you could ask this doctor that you trust what he would do if it were his body, or the body of his wife. I think it sounds like a good idea. I’m still not sure why the stent that he removed could not be made permanent. I’m sure you ask him about this. I think you have to keep moving forward and his idea is a good one. However anyone is going to this kind of pain without complaining is a fucking liar. Your life is has been shit and no use comparing it to cancer – your deal is just as bad and it’s ok to say so. I hear you. I here for you.
Hi, Katie – I’m so sorry that you’re struggling and I have to admit up front that I don’t understand a lot of what your history is and even some of the current circumstances… But I understand that you had a surgery on your digestive system related to pancreas. I’m unsure the date of your surgery, but I do know that all of our insides take time to heal and I hope you will consider that the area of your body in particular takes longer. I don’t know the level of pain in my mouth and bland foods so I am NOT trying to suggest that you continue to live in any kind of unbearable paini… but I think you should try to eat small amounts of bland foods and give it time to heal. I think the risk flip the surgery are too high and that the strain on your family from the last surgery is to recent.
My own why did my phone make a whole bunch of mistakes… I hope you understand the intent of my message and that you start to feel better soon. If you have the ability to clean it up at all please do. We are close to the same age and I feel for you.